Hereditary Spastic Paraplegia

[jackie]

I have Hereditary Spastic Paraplegia and have a hard time working out because I cannot get moving fast enough to get my heart going. I swim twice a week but my question is, how much exercise do I need, since my abilities are limited? I swim about 30 lengths of a regular sized lap pool at the YMCA. Then I try to use a kick board for a couple lengths. My legs are shot by the time I am done. The alternating days, I go through the Cybex machines at the Y. That is exercise, I know, but I do not sweat and get breathing heavy. I tried spinning classes, but my legs were so unstable after finishing that it was an effort to get to the car. I do Yoga classes now and then for the stretching, which is good for my legs.

Everyone who read this post probably is thinkin, "What is Hereditary Spastic Paraplegia." It is a rare degenerative spinal cord disorder. You can read more about it by visiting my e-zine article on it at http://ezinearticles.com/?expert=Jackie_Wellman

Jackie Wellman
www.hoppy.bravehost.com

[lady cop]

Jackie, i don't recall having met you before, and have no answers for you. but i wish you all the best.

[devist8me]

I would talk to your doctor about how much and what kinds of exersize you should be doing. I'm sure he/she would have an idea, or, would know who to call to get one. Good luck.

[buttercup]

swimming 30 lengths twice a week & occasional yoga sounds about right to me, wish i was as motivated

[john8pies]

I second what they all say, and wish you all the very best.

[Ricet]

I also have this disease. I am 32 yrs old. I have found that hot yoga is amazing!!! It helps relieve the stiffness and tightness in my hips. In fact, I liked it so much, I decided to get certified and become a teacher. They are hour long classes. I would suggest doing it at least ever other day.

A side note: I don't know if you have a weight issue but I have found that the less fat I carry on my body, the better I feel.

Good luck!

[oscar]

Originally Posted by jackie

I have Hereditary Spastic Paraplegia and have a hard time working out because I cannot get moving fast enough to get my heart going. I swim twice a week but my question is, how much exercise do I need, since my abilities are limited? I swim about 30 lengths of a regular sized lap pool at the YMCA. Then I try to use a kick board for a couple lengths. My legs are shot by the time I am done. The alternating days, I go through the Cybex machines at the Y. That is exercise, I know, but I do not sweat and get breathing heavy. I tried spinning classes, but my legs were so unstable after finishing that it was an effort to get to the car. I do Yoga classes now and then for the stretching, which is good for my legs.

Everyone who read this post probably is thinkin, "What is Hereditary Spastic Paraplegia." It is a rare degenerative spinal cord disorder. You can read more about it by visiting my e-zine article on it at Jackie Wellman - EzineArticles.com Expert Author

Jackie Wellman
Main Page @ hoppy.bravehost.com - A Bravenet.com Hosted Site

Hi jackie,
I don't know about the States but here in England we have arm chair exercisers that strengthen your legs while your sitting at home in front of the TV.
This is the sort of thing:

Lymgym

You can get far sturdier one's like pedal exercisers in disability stores.

Hope it may help

[TNoutdoors]

Hey Jackie,
I truly do understand your situation. I was diagnosed with HSP back in 2000 with the condition worsening at a slow but steady pace. Before being diagnosed I worked in the family construction business and loved being in the outdoors, spending time fishing and hunting. So I had really no need to worry about an excersize program because I was so active.
But as time passed, I started to notice my physical health slipping. And I think that the hardest thing about excersizing with HSP is just how hard it is to get your heart rate up. We can't do the simple things like jogging and other arobic activities.
And for me there are good times and bad times as far as mobility goes. So there is no single answer as to what exercise program is best. One day I might be able to take a brisk walk. But the next day I might be lucky to get one foot in front of the other.
So this is what I do. When my legs aren't too bad, I spend time trout fishing in the mountains. Now you need to picture someone moving very slow and careful. The reason that I say that this helps me is because of the uneven terrain, it forces me to use my muscles, thus wearing them out and weakening the spasticity.
But when my legs aren't cooperating I like to take my wheelchair to the park and follow the paved trails or take it to the local school track. The trails build muscle strength and the track is nice and flat so I can reach the cardio level that we all need to experience.
Now I am sure that this is not the answer that you might have been expecting. ANd it may sound a little crazy. But you might find some physical acitivities that you like to do. ANd just by doing them regularly might be the little extra thing that helps you get to where you want to be. Just this summer I lost right at ten pounds. And I did nothing different than having a good time on the river.